I was born a carrier of a blood clotting disorder called hemophilia. Hemophilia is a disorder that only women carry (and pass on through having children) and men are the ones that can have the trait (there have been rare cases where women display the trait as well, but it is VERY unlikely).
So what is hemophilia? Hemophilia is a rare blood clotting disorder where your blood does not clot normally if you are cut, have a nose bleed, have surgery, loose a tooth or any other way of bleeding externally. It also means that you have spontaneous internal bleeds which backs up in your major joints which causes deterioration of the bone and the need for joint replacements. It can be a life threatening disorder, but science is making some great gains in the study and treatment of hemophilia. Because of the type of hemophilia I carry is the most severe (hemophilia type A severe) any time a boy with this type of hemophilia bleeds externally or internally, he would need to go to the hospital and receive a blood transfusion of factor 8 blood (this is the type of factor blood that is lacking in men with my type of hemophilia). From the information we gathered from our specialists, this could happen 2-3 times a week, even with a newborn. This also means all contact sports and many physical activities are ruled out due to the nature of the spontaneous bleeds.
So back to the beginning...I found out I was a carrier when I was 19 and had wanted to be tested because I knew my mom was a carrier. Even though I do not have any blood clotting issues, I displayed several characteristics of being a carrier such as frequent nose bleeds and I bruise very easily. I was not surprised when the results came back confirming I was a carrier (I had a 25% chance of being a carrier, which will be the same percentage if Bruce and I have a baby girl in the future).
Now what this meant for our son Nolan is a very different story....
Once we found out we were having a little boy, we have spent many hours working with genetic counselors and hearing from hemophilia specialists about what this could mean for Nolan if he tested positive for hemophilia. Nolan had a 50% chance of testing positive for hemophilia as well as any of our other potential sons. We were given the option to wait until he was born to be tested, or be more proactive and find out while he is in utero. I felt as a first time mom that it would be better for me to know if he had it before I delivered because I wanted to be able to focus on labor and delivery and not be wondering about hemophilia at the same time. Also, if he had hemophilia I would have had to have a c-section, so if we didn't find out, I was going to be scheduled for a c-section. So on December 22nd I went in for an amniocentesis, where they drew four tubes of amniotic fluid. We were told it would be 4 weeks before we knew anything.
Fast forward to current time....We received a call from our genetics counselor late Thursday night and found out that Nolan does NOT have hemophilia!!! He will never have it, nor can he pass it on to his future children. Of course he would have been loved either way (the same feeling we have if any of our children in the future have hemophilia) but honestly I was VERY nervous about being a first time mom, plus having a child with a severe blood clotting disorder. This has been a very difficult and stressful process, but one we knew we would encounter if we wanted biological children. So for those of you who knew about this already, thanks so much for your prayers. For those of you who did not know, I hope you learned something new today :-) and can rejoice with us as well! God has been gracious to us and we are rejoicing in His goodness.
Grace and peace,
Renee
P.S. The nursery is basically done, but we have one more shower next weekend so I will be posting FINAL nursery pics in a week or so!!! 5 more weeks to go!!!
